Interview with Bente Skansgård, ULOBA on January 18, 2011

User-controlled personal assistance was implemented in Norway in 2000. The municipality has the monopoly in granting the intervention as required and has a strong influence on how assistance is organized—for example, by determining who can employ the assistants. Norway’s largest assistance provider outside the municipalities, the personal assistance user cooperative ULOBA, revealed in a recent report that conditions vary greatly between different municipalities. The government also recently retreated from promises to introduce legislation and now instead suggests worsening of personal assistance.

About three thousand people have personal assistance

User-controlled personal assistance was implemented in Norway in 2000 and in 2005 the right was expanded to include individuals who are unable to supervise their own assistants, such as children and people with cognitive disabilities. Personal assistance is regulated under the Norwegian Social Welfare Act 4-2 and 8-4, which states that the municipality must offer user-controlled personal assistance as part of its social services and that as far as possible it should be structured in consultation with the individual. This means that the municipalities have great influence over the realities of personal assistance; for example, the municipalities can determine who is permitted to be an employer for assistants.

The co-operative ULOBA launched a pilot project in 1991 and currently has more than 900 assistance users as owners. Bente Skansgård, political adviser at ULOBA, states that about three thousand people have personal assistants in Norway and the number is slowly growing. “Of about three thousand personal assistance users, about one third have chosen ULOBA, the rest have the municipality as assistance provider, except for 9 percent who are employers and about 2 percent who have chosen private companies, which have recently entered the market.”

Report reveals major differences between municipalities

ULOBA’s survey “Municipality-driven personal assistance?”, in which 64% of Norway's 430 municipalities participated, showed that conditions vary greatly between municipalities. For example, 18 percent of the municipalities stated that user-controlled personal assistance does not exist in the municipality and almost half responded that it is not possible to choose providers or to employ one’s own personal assistants, according to Bente Skansgård. “It may vary from only being able to choose the municipality to receiving a list of municipality-approved service providers. Municipalities have far too much freedom in this regard,” says Bente Skansgård who believes there should be a political governance of what user-controlled personal assistance should mean with a level playing field across the country—in other words, legislation affirming personal assistance as an individual right. “One major problem is that it is mostly municipal officials and not politicians who create the rules for how user-controlled personal assistance is granted and administered and officials often have an in-home support service perspective.”

The report also said that 27% of the municipalities responded that assistance users cannot dispose of their hours freely and 30% noted that it is not possible to select assistants freely. The report also shows a correlation between free choice of employer and satisfaction among assistance users. “In those municipalities where people can freely choose who will be the employer, 56% were very satisfied, compared with 44 percent in those municipalities where it was not possible to freely choose the employer.”

Government proposes worsening conditions instead of legislation

During the 2009 election campaign the current government, led by Arbeiderpartiet (Labor Party), said that it wanted legislation for personal assistance. In the 2007 bill “Proposal for stronger statutory right for user-controlled personal assistance” from the Norwegian Ministry of Health and Care Services, they proposed free choice of service provider, a position which was supported by 70% of the relevant state authorities and other stakeholders who were invited to comment the proposed bill. However, the government recently changed its attitude, according to Bente Skansgård, and now suggests quite the opposite with worsening conditions in the new draft bill “proposal for new law on municipal health and care services.”

“The government no longer wants to implement individual legislation or the right to choose employer because it would be too expensive. It is proposing the opposite, that user-controlled personal assistance should be linked to in-home support services, personal assistants should be defined as healthcare personnel and that individuals with disabilities should once again be defined as in need of care. The practical consequences are uncertain, but it is a big step in the wrong direction.”

The government’s changed attitude has led to strong protests, including from ULOBA, the Norwegian Association of the Disabled and the Federation of Organisations of Disabled People. However, Bente Skansgård believes that no decision will be made regarding this matter any time soon. “Right now reports are being written to be circulated for comment and it can take up to two years before a decision is taken in the Parliament, but we hope that strong protests will stop it.”

How personal assistance is structured today

Bente Skansgård personally receives 65 hours of personal assistance per week and has four assistants who have been employed part-time for several years. The schedule is prepared one month at a time. “I schedule assistance hours for major events and during three periods each day, morning, noon and night. I also spend some time in Sweden and have therefore hired a few Swedes.” Bente Skansgård explains that there is no definition of the needs for which assistance is provided, nor is there any age limit. “Eligibility is not tied to a medical diagnosis. Users specify their needs in the application and everyone, including people over 65, can apply for personal assistance.”

How is the need for a number of personal assistance hours determined, and where is the limit for eligibility for personal assistance? “The municipality decides and you have to present an argument for your needs, ranging from daily needs to leisure activities. You are granted support for a number of hours per week and for one financial year at a time. It can vary from 8 hours/week to 24/7.”

What kind of support is provided to those who do not receive personal assistance? “Municipal in-home support services or an institution.”

Can you receive personal assistance while admitted to a hospital? “Yes, usually for a few months, but if you are hospitalized for a long time, whether you get to keep the personal assistance may be questioned.” Income and wealth do not affect approval for assistance hours, according to Bente Skansgård, but some municipalities charge a fee for assistance hours that are considered to be housework/in-home support services if the user has a certain income. “In my neighborhood in Oslo, they have three income levels that determine the size of the fee; I pay a fee of SEK 20,000 per year.”

Can assistance users choose who they want as assistants? “ULOBA members and assistance users who employ their assistants themselves are free to employ people as their assistants. When the municipality is the employer, I think it varies according to how strongly the person argues for what they want.”

How freely can users use their assistance hours? “At ULOBA and when the user functions as an employer, the hours can be used freely within a 12-month period, i.e., the budget year, but when the municipality is the employer, this may also vary.”

Can the user save up money for higher expenses; for example, before a trip? “Yes, within the calendar year. You can also save money from one year to the next, but within ULOBA savings in excess of SEK 100,000 are added to the Solidarity Fund where other supervisors at ULOBA can apply for money,” says Bente Skansgård.

ULOBA often provides services at lower costs than municipalities.

When the municipality allows ULOBA to provide personal assistance services, the fee is SEK 347 per hour of assistance,” says Bente Skansgård. ULOBA bills the municipality for the assistance hours. “The hourly rate includes on average 85 percent payroll costs, such as pension and sick pay, 5 percent goes to assistance overhead expenses for assistants, advertising and more, and 10 percent to ULOBA’s administrative expenses for the office, staff or training and advice to assistance users. The municipality's expenses for assistance are usually higher,” says Bente Skansgård who notes that it is often profitable for the municipality if ULOBA provides the services. “The ECON report, which we ordered, shows that ULOBA’s costs för user-controlled personal assistance are equal to or less than the municipalities’ costs, especially when taking into account indirect costs such as administration, follow-up and training of supervisors,” says Bente Skansgård.

Bente Skansgård was interviewed by Kenneth Westberg on January 18, 2011